Dawson attended the HA briefing in advance of the journal's February edition dedicated to all things ePatient. He calls attention to the fact that no "actual patients" were on the panel, while appreciating what HA has done with the issue. Listen in to audio from the HA briefing.

A nice summary of key issues from the HA briefing, which Molyneux, American Journal of Nursing senior editor, attended in D.C. Molyneux is spot on as he writes, "It’s unlikely we’d be talking so much about patient engagement if we weren’t facing, perhaps as never before, the need to do something about the glaring gap between costs and quality in the U.S. health care system."

AIR authors contributed two articles to the HA edition. The first article compares data available with what patients are seeking. The second suggests a framework for increase patient engagement. The link in turn links to reprints of both articles in full.

Eileen O'Brien
Lori and Matt Sames are fighting for the life of their daughter, Hannah, who has the ultra rare disease, Giant Axonal Neuropathy (GAN). When Hannah was diagnosed in 2008 there was no GAN patient organization, so the family started Hannah’s Hope Fund and are about to start a gene therapy clinical trial.

App developer Ekins discusses his inspiration for Open Drug Discovery Teams (ODDT), which applies the concept of open sourcing to the collaborations of research and awareness for rare diseases. Yet within the technology is the humanity and curiosity that leads to innovation.

Canadian press The Globe and Mail shares the story of a young patient diagnosed with MPS VI, an extremely rare metabolic disorder. The article explores the burden rare disease patients face without a large enough population of patients to submit to drug testing, as well as pharma's general reluctance to invest in drug development for small populations.

Employee Social Media Policies After NLRB Appointments Invalidated by Federal Court ... Everything You Know Is Wrong?David Harlow
The National Labor Relations Board has issued a series of reports based on its decisions in cases regarding employer regulation of the use of social media by employees. Now that the validity of recess appointments to the NLRB has been upended by the DC Circuit Court of Appeals, these – and many other – NLRB rulings are technically invalid. Should health care employers therefore ignore the NLRB precedents on regulating social media? Harlow says no – the contours of the rulings should still be followed in sensible social media policies.

Breaking down age brackets, Ziady explores connecting the brand with the consumer. "More and more, patients are shopping around for care, the same way they do for other consumer services. Patients are actively researching their clinical care alternatives to determine how and where they will spend their healthcare dollars."